Good news from Scotland for Thalidomide survivors but fight continues for Irish campaigners

Thalidomide survivor and campaigner Finola Cassidy’s passion for tennis goes back to her schooldays. Her PE teacher taught her a special grip adapted for her left hand, damaged as a result of the drug taken by her mother and many other pregnant women for morning sickness until it was withdrawn internationally at the end of 1961.

Like many Thalidomide survivors, Cassidy, spokeswoman for the Irish Thalidomide Association (ITA), is now 60. She was delighted to be travelling to Wimbledon on Thursday after her daughter presented her with tickets to this weekend’s women’s singles finals as a special birthday present.

Due to back and shoulder problems, connected with Thalidomide, she has been unable to play tennis for more than six years now but still enjoys annual tennis holidays with close friends. “It broke my heart to stop playing, I had a nice little drop shot and I could add a little bit of slice.”

But Cassidy remains so keen on the sport that she has told her family: “I want to be buried like a Pharoah, with a tennis racket.”

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Cassidy welcomed news from Scotland this week, where the Scottish government is guaranteeing lifelong support for the approximately 50 Thalidomide survivors in that country.

“We are so relieved for our Scottish family, the burden of worry and pain when seeking justice is overwhelming,” she says.

The Scottish government had in 2013 committed £14.2 million (€16.7 million) to help survivors with health and living costs. This week, it announced that assistance would be extended to provide for grants to be allocated to survivors on a needs basis, as assessed by the Thalidomide Trust, a Cambridgeshire-based charity.

Last year, then British chancellor Rishi Sunak pledged a “lifetime commitment” of funding to support Thalidomide survivors.

Cassidy says 17 survivors in Northern Ireland will also benefit from the UK’s approach, but the delay in establishing the Northern Ireland Executive is holding up implementation of the decision.

Thalidomide was a chemical ingredient which was sold under 10 different trade names in Ireland and some other countries from 1957 to alleviate morning sickness in pregnancy.

It was withdrawn internationally in 1961. That year, 51,000 packets of just one brand – Softenon – were sold in the Republic. Unlike in other countries, Thalidomide was not recalled here at the time it was withdrawn.

Some 100,000 babies worldwide were so affected in utero or at birth by the drug that they did not survive. Of an estimated 10,000 babies who survived birth, about half died in their first year.

Babies were born with shortened or no limbs, and with painful damage to nerves, organs, hearing and eyesight. Some 90,000 women taking the drug miscarried.

There are now an estimated 2,500 Thalidomide survivors worldwide.

In the 1970s, the parents of more than 100 children here had responded to an appeal to establish just how many were harmed by the drug.

Medics recognised only 32 of them as survivors. According to campaigners, those from lower socio-economic backgrounds were less likely to have advocates on their behalf and several were not included in a government-funded compensation settlement.

In the half-century since then, developments in medicine identified more indicators to confirm that a person had been exposed to Thalidomide, and the number of identified survivors here who are still living is now about 40.

Maggie Woods is among those 40. She celebrated her 60th birthday this week with a party for 70 people.

A native of Co Donegal, Woods lived with her family in Killybegs until she was six. Her parents were unable to get her enrolled in the local national school. After the school refused, for “insurance reasons” to take her, doctors recommended she attend St Joseph’s orthopaedic hospital in Coole, Co Westmeath, where she remained until she was 21, returning home only for school holidays.

As a young girl she missed her parents and three siblings, and does not have pleasant memories of Coole. “It was horrible.”

Birthdays were not really celebrated during her earlier years, but Woods says she has been making up for that since.

“A birthday is a big achievement because, for bizarre reasons, the doctors did not expect us to live as long as we have. Because we’re all around the same age, they don’t know that much about us and what to expect, there’s no measuring stick for any of us.”

Like Cassidy and the other survivors, Maggie’s tenacity is evident. “I was born with some sort of gutsiness, I love life. I just recently got a job with the Galway City Partnership and I tell my sons: ‘Look at Mammy, working at 60’. I have achieved more than most people in their able-bodied lives but I’m just getting on with life, what else can I do?”

Her two sons, now in their 30s, and her grandchildren were at her birthday party which Woods saw both as a cause for celebration and a reminder of passing years and future challenges.

“Our bodies are ageing 10 years ahead and we’re using our bodies to be able to manage in a way that most people don’t have to. Everything is a challenge. I can walk but the fact is I am only three feet seven and that’s what people see. When I put my foot out the door, I’m treated differently.”

The State’s response to the survivors over the past 60 years has been “pretty shocking to say the least”, she says.

“It would be nice to have closure, to put it all to bed and be able to live the rest of my life with dignity but I don’t see that happening any time soon. We’ve been a long time battling and I have more years behind me now than ahead of me.”

She is very concerned about having all the necessary supports and healthcare available to her as she ages. “Your health is your wealth, there’s no point in being given buckets of money when you’re 80 or 90 and you can’t appreciate it. I want to be able to dicky up and step out now.

“It is hard to believe that the Irish State still won’t accept its hand, act and part in the Thalidomide story. I’m 60 now and I won’t give them any more chances to hurt me. I’m living my best life – not because of them – but despite them.”

Cassidy says the approach of the UK and Germany, where Thalidomide was manufactured, to compensate survivors is in stark contrast to the approach here.

During her 60 years living with the impact of Thalidomide, there have been 25 ministers for health here but still no final resolution which would assure survivors of adequate lifelong care, she says.

This is becoming increasingly important as survivors age and their healthcare needs become more complex, according to Cassidy. Like Woods, she notes that Thalidomide survivors age about 10 years ahead of other people in terms of need.

The agreement reached by the State in the 1970s with the parents of some survivors provided for payments for some of the children. Unlike many other minor settlements, those settlements were never ruled by the High Court with the effect the funds were not lodged in court for the purpose of being managed for the benefit of the children.

Because the view at the time was that the children would not live long, the payments have not proven adequate for the complex healthcare needs of many ageing survivors.

Those survivors who were recognised under the 1970s deal have received some payments from a foundation set up by the German government, a factor which has been relied on by the Irish State in resisting survivors’ bids for more compensation from it.

Among the concerns raised by survivors is the State’s failure in 1961, when it was withdrawing the drug, to also recall it – with the effect it remained in medicine cabinets and allegedly led to further Thalidomide cases.

A former minister for health, Erskine Childers, when asked by reporter Olivia O’Leary about the reasons why the drug was not recalled at the time of withdrawal, appeared to indicate there was some concern at government level that some pregnant women might, out of fear about the potential impact of Thalidomide on their baby, not proceed with their pregnancies.

The battle for compensation from the State led to court action by most of the survivors, represented by Malcolmson Law, in 2013.

Cassidy says a number of survivors were “so worn down” they accepted a final settlement offer of €62,000 when Mary Harney was minister for health.

A High Court judge, whose approval of the €62,000 offer was required in the case of those survivors who were wards of court, refused to approve it after describing it as “wholly inadequate”.

The only fair thing now is for the Government to acknowledge the State’s failures in the past, to apologise and to put in place a proper compensation scheme

—  Fine Gael Senator Barry Ward

The court action by the survivors is against the drug manufacturers, German firm Grunenthal GmbH, the Irish distributors, TP Whelehan Son & Co, and State parties, who all deny the claims against them.

The survivors want an apology and adequate compensation. A long mediation of the case failed to secure an agreement and it has yet to get a hearing date. The other defendants have discovered documents sought from them, but the State has yet to make discovery of the documents sought from it – including concerning its dealings with survivors in the 1970s.

The Department of Health said in 2019 it held a “very large number” of documents relating to the 1970s scheme and argued that the costs of the discovery sought could run to €26 million.

The discovery impasse and the Covid-19 pandemic has meant there has been little progress in the case. It remains open to the survivors to seek to enforce the court’s order requiring the State to make the discovery sought.

Separately, a spokesman for Minister for Health Stephen Donnelly said the Minister had met the representative group.

The HSE had contacted all those affected by Thalidomide offering to meet each person individually to discuss their unique health and personal social service needs, and to seek each person’s views on how they would like those services delivered. The HSE will develop recommendations for future planning and pathways of care for survivors, he said.

Mr Donnelly has offered the group another meeting, he said. “Work is nearing conclusion in the Department to provide health and personal social supports to Irish survivors on a statutory basis, and the Minister expects to seek Cabinet approval for Heads of Bill in the autumn.”

Several politicians across all parties have got behind the Thalidomide survivors over the years and last week Fine Gael Senator Barry Ward spoke in the Seanad to urge the State to “stop dragging its heels” and act to provide a solution.

“It is really unfair the Government has not moved to compensate or acknowledge those people who have lived for over 60 years with varying degrees of disability,” he says. “But as unfair as it is on those who suffered injuries, it is desperately unfair on their mothers, many of whom blamed themselves despite the fact that they did not know about the effects of the drug, and many of whom have now passed away.

“The only fair thing now is for the Government to acknowledge the State’s failures in the past, to apologise and to put in place a proper compensation scheme.”

The “narrative” from the Department of Health for the past number of years is “wrong”, Ward says. “The Government and the Department of Health must act now, firstly to apologise unreservedly to survivors, those who have passed away and their families, and secondly to provide adequate medical care for these victims.

“There are now less than 40 survivors in Ireland still awaiting recognition of their circumstances 60 years later,” he says. “This is completely unconscionable.”